EFF

            For “Autism Awareness Month”…which most real live autistic people and parents of kids on                             the spectrum feel should be called “Autism Acceptance Month.”

My friend Heather, @ Changed for Good, wrote a companion piece to this one; please check it out over at: http://changedforgoodautism.blogspot.com/2015/04/day-28-acceptance-is-not-awareness.html

I received this email last month:

[Swan Ayi {Auntie Swan}]

to me

Odd, NH [New Hampshire] Senate just voted to have Autism Spectrum Disorder printed on individuals' drivers licenses.  What's the point of that?

My reply:

[Full Spectrum Mama]

to [Swan Ayi]

EFF you, NH.

Hers:

[Swan Ayi]

to me

Agreed.

This is flat out DISCRIMINATION.

Suppose you heard that from now on all blonde people would be stigmatized in this way? Or all people with depression? Obviously, some blondes (depressed people…) may be precise, single-minded, “excellent drivers,” but others might have trouble focusing, or erratic behavior, or compromised intellectual ability, or – who knows?

Yes, they passed the rigorous driver’s test same as everybody else with a license. And, true, some blonde or depressed people might not need to have this factor listed on their licenses, but since some blonde and/or depressed people are “different” -- and therefore possibly dangerous drivers – the state of New Hampshire needs to make their condition perfectly clear to cashiers, police officers, airline personnel, restaurant servers, and so on…just in case.

No, I am not going to address the possibility that being autistic might affect some individuals’ driving or demeanor. So might being tired, or being an a-hole, or being worried, or distracted…

G’s shift to confidence has been so gradual, so delicate, so life-changingly wonderful. What does a ruling like this tell him and the rest of us on the spectrum, many of whom work so hard for our confidence and accomplishments and inclusion in a neurotypical world? As lame and wrong as they may be, such rules send a strong, potentially devastating message.

I’ll be letting those politicians know where we stand: My family, for one, will be spending as little time and money in NH as possible following this decision.

Love,
Full Spectrum Mama

AQUARIUM: FISHY?

At G’s last IEP meeting, someone suggested he join a Social Skills/Pragmatic Language group that was starting nearby. If you are a parent of a child with differences (or a child with interests for that matter), you know how expensive activities (therapeutic and non-) can be. The fact that this group was FREE, because it was somehow part of a graduate program, caught my attention. I signed G up pronto. So far, we have been to three meetings and G has really enjoyed them. The boys (all boys…) play games and build things together and practice learning about each other and asking one another dialog-producing questions. Maybe the best part of all is the lack of eye-rolling: no one in this group has that developmentally-appropriate, neurotypical tendency to roll their eyes when someone acts “different.”






During the last meeting, the director of the program came into the waiting room and informed us that we were welcome to “watch the group” through a one way mirror. Apparently, this had been an ongoing activity for the graduate students and faculty involved, and was now an option for parents. I joined some students (and/or faculty) and other parents behind said mirror as they watched the meeting. It felt a little bit like looking into an aquarium. From time to time, people would comment, stuff like, “Oh, watch him, he’s really communicating,” or “Fascinating: watch how he…!” Several were taking notes.






I felt like the children were specimens in that aquarium. Without being ungrateful for the pleasure and – perhaps – learning that G was gaining from the group, as well as for its being free of charge, for the very reason that it was “educational” for graduate students, I nonetheless felt both creeped-out and horrified.






I didn’t want to undermine the class by making G feel funny about it, and I support the program if the participants find it beneficial. So I sent this email to the director of the program over a week ago:






Dear [program director],


I hope this finds you well.


I was a bit uncomfortable watching the kids in that context and wondering what you tell THEM about the window/mirror? If it's not too much trouble,


Sincerely,


[Full Spectrum Mama] ([G]'s mom)






I haven’t heard back.






I am all for scientific research, whether around health, genetics, disease, sleep, diet…autism…It can be informative, fascinating, and helpful for those who need or want help (this latter is a key distinction). As an academic, I can on some level understand and even accept that we need real live autistic people to learn about autism. Same for “autism awareness” (April is Autism Awareness Month), in that for people to accept autistic people as equal fellow human beings it’s perhaps best to get to know – in a non-awkward or –contrived or -condescending fashion – a real live autistic person or two. Shouldn’t be too hard what with the new statistics, right? …RIGHT?






Let’s also assume that everybody’s heart is in the right place in all of these endeavors from the Social Skills group to the folks who tout “Autism Awareness” to those who are skeptical thereof…






My not wanting G to be a “subject” of study could be NIMBYism, except – I like G just the way he is. In other words, I/we are not looking for scientific findings that will show us how to make G “right” or “better,” he's just practicing hanging out with some kids. His IEP team felt he needed help with social skills, this group came up, G liked it, end of story.






As a mother, and as a person on the spectrum myself, I can’t shake this de-humanizing aquarium image. And I can’t help but feel that if this kind of observation is "normal” there are some other groups I’d rather see put in an aquarium. Politicians, in general, come to mind. Abusers. Bullies. Mean people. What makes them tick and how can we cure them?






To be continued when I hear back from the program director…I hope.






Love,


Full Spectrum Mama

HOP N SNACK

You know what? I started a whole heartfelt response to Autism Speaks' terror mongering, homogenizing "Call to Action," along with everybody and her mother.

Then, while I was bounding around, naked, hemorrhaging some of the 2.3 million dollars - each - it apparently takes to raise me and my son, I found, via my friend One Quarter Mama (http://www.onequartermama.ca/2013/11/wondrouswednesdays-hop-n-snack.html#),  a response that will be hard to top:

http://wayshelter.com/Toolbox/InitiativeAction/Hop_n_Snack.htm

Hopping and snacking -- hope you are too, ya deviants,

Love,
Full Spectrum Mama